Ben’s Story

Today’s story is my final story for Heart Month and one I have been excited to share. You might have already heard of this young man. His name is Ben Breedlove and I am excited to share his story, not only because he had a different form of Lucy’s disease, but he also grew up in Austin. (Lucy had dilated cardiomyopathy, while Ben had hypertrophic cardiomyopathy. Those are the two most common forms.)

I first read about Ben in People magazine while I was pregnant with Lucy. This was long before she became sick. I didn’t know what cardiomyopathy was. My big takeaway from the story was that this young man was wonderfully brave and that I was proud he was from Austin. After Lucy became sick and I realized he had the same disease, I was surprised and also hopeful that Ben’s story would cause more people to take notice of pediatric cardiomyopathy and help us find a cure.

Ben grew up in Austin and went to Westlake High School. He was a local celebrity, thanks to his YouTube videos, which doled out relationship advice to his peers. He died December 25, 2011, at the age of 18 and later gained both national and international fame for two videos he posted a week prior to his death: “This is my story (Part 1)” and “This is my story (Part 2)”.

Watching Ben’s videos, I teared up. I hope that Lucy would have had that courage and optimism if she had gotten the chance to grow older with this disease. Whether you believe in Heaven or not, I think everyone can agree that Ben transcended terrible circumstances to live a happy, fulfilled life. I am proud to share his story and thankful to his mother Deanne for permission to do so.

Ben told his story best through his videos, so I am going to post links here. Before I do, I want to thank all of you who have read and shared the Heart stories from this month. It means a great deal to those of us who have chronically ill children and who have lost children to this disease to be able to share, as my friend Tove put it on her blog, “the heartbreak and miracles we witness every day as heart families”.

The Ben Breedlove Memorial Fund:

To learn more about pediatric cardiomyopathy, please visit:

For information about Ben’s sister Ally’s best-selling memoir about Ben “When Will the Heaven Begin?”:*Version*=1&*entries*=0


This is my story (Part 1)


This is my story (Part 2)

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: